Tuesday, May 24, 2016

After four years, I'm done with Equilibrant. (Equilibrant is an over-the-counter immune modulating supplement recommended by one of my doctors, Dr. C.) Apparently, I don't need it anymore. I began taking Equilibrant in April, 2012. Almost immediately, it became clear that the Equilibrant was helping modulate crashes. The peaks and valleys were less severe and less frequent (especially the valleys.) So I stayed on Equilibrant at the full recommended dosage of 6 tablets per day for 4 years.

Recently, in my ongoing efforts to find answers to my shortness of breath (SOB) problems, I decided to take an extended holiday from Equilibrant. In my desperation to find something, anything that helped, I thought there was a possibility, however slight, that Equilibrant was now leading to an autoimmune response that was responsible for the SOB. So I just quit. I didn't even reduce the dosage slowly. One day I just stopped.

It's been about a month or more since I quit Equilibrant and, so far, I still feel fine. There's been no improvement in my SOB, but that's a topic for another post. It's possible that I could see the return of the extreme "roller coaster" crash cycle sometime in the future. For now it seems Equilibrant was the right supplement for me at the right time, but that time has passed. I seem to have stabilized since I first began taking Equilibrant, so perhaps I simply don't need it anymore. I'm always happy to give up a supplement, especially one as expensive as Equilibrant, if I don't need it anymore.

At the same time, I've also gone off of a supplement called Immuno-Stim, which was also a collection of immune modulating compounds, which had some over lap in ingredients with Equilibrant. So far, so good...

Sunday, May 1, 2016

Lately, I've been making a conscious effort to get more sun (safely, of course, with sunscreen.) Most people in the ME/CFS community are familiar with the various studies about the links between Vitamin D and sun exposure - studies showing that certain neuro-immune conditions are far more prevalent in higher latitudes, where sun exposure is less. I won't repeat that literature here.

I've noticed that when I spend at least an hour during a given day with a signifiant amount of skin exposed to natural sunlight, I feel better in the evening and the next day. I sleep better too. Much better. Before I fall asleep, the feeling is of an increase in physical strength. I suddenly feel stronger and more virile.

Since very early after my diagnosis of ME/CFS, I have taken supplements of Vitamin D3. I've had multiple doctors express to me how critical it is for ME/CFS patients to have Vitamin D3 levels in the normal to upper-normal range. Under doctor's orders, I have supplemented with anywhere from 5,000 IUs to, at times, as much as 10,000 IUs of vitamin D3 per day. This has ensured that my vitamin D3 levels on blood tests have maintained in the range of what my doctors say is "optimal." It's difficult to say if these optimal levels contributed to the steady improvement I experienced from 2011 through 2015.

But I do know that supplemental Vitamin D definitely does not feel the same as the benefits I get from natural sunlight. I don't know if sunlight benefits me in some way besides Vitamin D (I can't imagine what that could be) or if the natural production of Vitamin D somehow trumps the supplemented version.

When we supplement Vitamin D orally, it must absorb from the stomach through the liver. By contrast, when we make Vitamin D through sun exposure, some of the vitamin forms on the surface of the skin and then absorbs through the skin. According to one of my doctors, it can take 24-48 hours for this Vitamin D to absorb, thus his recommendation that I not shower until at least 24 hours after a good sun exposure. (This is very difficult for me to do given the combination of sweat and sunscreen on my skin, but I have been trying to do it.)

The bottom line is, it is unmistakable that I feel better when I've gotten exposure to natural sunlight. Like everything I've found that helps, it's not a cure-all, but it's one small thing I can do to better manage this illness.

Search this Blog

DISCLAIMER: I am not a doctor and have no medical training. Nothing in this blog should be construed as medical advice. This blog simply recounts my personal experiences and, at times, summarizes research from other sources. I can't verify the accuracy of these other sources. Never rely on anything you read here in making your own medical decisions. Always consult a doctor.

Follow by Email

What is Myalgic Encephalomyelitis (ME)?

The clinical definition of ME is complicated, and the symptoms are many. It is a "multi-system disorder" that affects a person's immune system, hormones, nervous system, and energy (at the cellular level). I prefer to explain, simply, that it feels like I have the flu. Every single day. This is an oversimplification, but it's often the best way to explain it to a healthy person.

About Me

I came down with ME in June, 2011. I was diagnosed six months later. This blog tracks my progress; my successes and failures along the path to (hopefully) sustained remission.
I live with my wife and two young daughters in Southern California.